Hi,
I've been reading the posts here. I'm actually in the MG forum, but recently saw a new neuro who mentioned polyneuropathies as a possible dx for my second, previously just guessed at, dx.

I looked up GOBS of PNs, and the CIPD fits EVERYTHING that is not the Myasthenia Gravis. It's been around for at least 14 years, but they all thought either I was crazy, or some said leftover symptoms from a cord compression in 1996. Long story but I'm believing it was never cord compression.

Anyway, now I'm feeling a real sense of urgency here. This is progressing way to fast during this particular flare up. I had an unruptured brain aneurysm coiled (platinum coils) on 1/28/09. Woke up in my room with a large white hole in the vision on my right eye which has stayed but fluctuates. My second day home from the procedure, everything went to pot.

Myasthenia weakness kicked up, then the numbness, pain, tingling and muscle spasms started up. My muscles are already showing some atrophy, and I am having a swallowing problem with COLD fluids - with Myasthenia cold helps the swallowing.

Research on I-net is indicating that platinum is BAD for CIDP - it's listed as a toxic cause of CIDP, but I don't know if the coils could leach enough into my system?

RE: The eye thing - the opthalmalogist said it definetly isn't a brain stroke as the neurosurgeon thought, it isn't glaucoma or retinal problems - he really doesn't know what it is. I discovered that demyeliniating process can cause this blind spot though.

I haven't been "formally" dx , but I think that's just because the new neuro hasn't had a chance to review all my old stuff yet. I have an evoked potential that indicated demyeliniation clear back in 1997, and they thought they would find MS on me, but never have - decided on the cord compression back then.

As I said - I've researched a lot of conditions, syndromes, etc. and nothing has every fit like CIDP for all the symptoms and the progression I have experienced all these years.

My big worry is with the platinum. I found some case studies where people had the occular thing occur with the platinum coil procedure and 2 of them DIED within 3 months due to respiratory complications (they didn't mention previous CIDP in them - probably just didn't know about it). I am experiencing some breathing problems which could either be my MG or ???

I need someone with experience in the progression of long standing CIDP to help me with determining if what I'm experiencing now may be in hyper-drive, or is just kind of how it goes.

Thanks a bunch.

Welcome, to the PN forum, Becky.

I am doing some searching on your question about platinum leaching and PN. This is going to take some time.

But for now, I have a few comments:

1) There is research on platinum containing drugs used for chemo in some cancers. These drugs cause PN, and the agent recommended to block this/prevent this/or minimize this is
acetyl-l-carnitine. This amino acid is also used for other toxic drug reactions which cause nerve damage.
So I would start using this ASAP... at least 2 grams a day.

2) Some drugs are used to block platinum toxicity... they are called sodium channel blockers...but all of them have side effects that are considerable. Discussion with a neurologist about this would be a good idea to see if it is a viable solution for you.

3) demyelination also occurs with some nutrient deficiencies.
I see you have a history of possible MS diagnosis. So that indicates to me you may have a significant problem with
B12/B6/folate. There is a new high dose RX only vitamin with all 3 in it, which was designed for neuropathic patients.
It is called Metanx. You can ask your doctor for this.
OR you can request a B12 test to see if you are low first.
If you have a genetic problem with methylation, and have had this for years...then your nervous system will fail eventually.
This is called the MTHFR mutation and is quite common. One sign of problems with it is elevated homocysteine, which can affect the retina of the eye.
The vitamins in Metanx are available OTC as well separately.
http://www.pamlab.com/Products,Metanx

Some people report autoimmune reactions to implants. Knee and hip replacements can be triggers for an autoimmune attack for those with genetic sensitivity.

I can understand that you are frantic. I would be too.

I will look around for you and come back to this post when I find something useful that I haven't shared already. I won't be responding to the post you made at MG. It will be here.

Thank you so much for the speedy and informative response!

My B12, Vit E, and Copper levels blood tests should be back any time now.

Interestingly, I had gotten some Acetly L Carnitine for my husband after his TBI and have taken it sporadically for my brain fog. I have 400 mg with 200 mg ALA formula. How much makes 2 grams?

I do recall in the discussion with my neurosurgeon his comment that one concern would be my putting more metal in my body - I already had 2 titanium plates from cervical fusions, and the wiring from my thymectomy also titanium. I need to add a question - can they remove this coil?
I'll be putting a call in to my surgeon 1st thing in the a.m. with that question.

I have to leave you with an ironic, once funny, item. After I got home from the coiling and was having problems I glanced at the newspaper. There is a little "cartoon" thing called Pot Shots by Ashleigh Brilliant. They are one-liner statements concerning life and living. The one that day was - MY EFFORTS TO REMAIN HEALTHY - are gradually killing me! I cut that out right away, having recognized the irony immediately.

I refuse to just lay down with this - if I can just impress on the med community in a rational way how urgent my gut tells me this is.

Oh, Ashleigh Brilliant.... I wish we got that cartoon here!

I saved one---it was actually on a postcard in a store---

It had a little girl picking flowers ...with the caption:

"If you learn one new thing a day, at the end of a year you will
have learned 365 new things".

I've always loved that one!

So I went looking on the net based on your post and found this!
http://thinkexist.com/quotes/ashleigh_brilliant/
He looks a bit like my husband (only with more hair)
He is posing next to the postcards like the one I saved!

I don't know about "removing" your coil. You should visit the Aneurysm forum here and maybe someone will know.
That is a question for a neurosurgeon. For now, I think you may be able to block the metal if it is leaching into you.

There are chelating drugs that may help. An environmental specialist or holistic doctor typically does chelating. That is another subject, however!

That tablet you have would require 4 a day.
After you use them up, I'd get the acetyl-carnitine separately so you can raise the dose. It also comes in a powder to save money. The ALA and the ALC you have is rather benign and does not have much of a side effect profile if at all.
It is best to divide the doses up. Carnitine has a ceiling for absorption, so taken all at once may saturate that too quickly and block some. When you divide it up more may get into your blood stream/24 hrs.

Are you taking any other drugs? You should tell me now.

The Pot Shots are so interesting to me, because sometimes they have such a hopeful, happy outlook and others are rather down and dismal - kind of like real life! I'm glad you were familiar with them.

I am taking:
40 mg predisone
25 mg metaprolol succinate ER (for aortic insufficiency-very minor)
500 mcg B12
75 mg Venlafaxine (Effexor) (calm in a bottle - I think I need more RX
is for 150 mg / day but I'm nervous about all meds now!)
60 mg every 2 - 6 hrs (depending on condition) of Mestinon
Mestinon 180 - 1 at night
325 mg aspirin ( due to coiling)
I just stopped taking 75mg plavix, original RX for 30 days following coil,
but when the eye thing continued/flared he represcribed
I believe that's it for now, except last night I took one of my Tizanidine (Zanaflex) 4mg to try to cut down the muscle twitching/cramping so I could sleep. That's the first I've taken that in over a month - I use them very rarely - still on a 30 day RX from 8/08.

Let me know if you need any more info from me - I have QUITE a history, you know! Lord, it sure helps to have someone to go to - keeps my brain a little more quiet.

I understand you have a medical background. What is it, if you don't mind my asking. I really respect the approach you take on the posts.

Thanks again.

drugs drugs and more drugs.... that is my history!

You are on some major drugs!
I'll post later---the depletions that just the prednisone cause!
I have some things I have to do this afternoon, but I'll be back.

But I see some things I need to bring to your attention that are quick...

1) Antidepressants in the SSRI family increase bleeding. They have warnings on them now for use with aspirin and/or most NSAIDs--excluding Celebrex.

2) Do you have your blood sugar monitored with that prednisone dose? Pred can raise blood sugar...and also raise blood pressure. Are both of these monitored by your doctor?

You know I had a stroke in my left eye, that was silent, and later attributed to a highly stressful work event, that raised my blood pressure that caused it. My symptoms were pain in the eye--a dull ache, a headache. That night I had a black hole in my central and lower fields in dim light, but in light it was a violet shadow.
I had angiograms in both eyes a few days later, which was when this was beginning to clear. The upshot was a hemorrhage from a blockage in the right branch vein of the retina. It cleared up by itself, and never came back. The blood backed up and burst into my retina and caused a large "bruise".
Hence the violet color.

Did you have an angiogram to evaluate that blank spot?

I also think you should take 1000mcg of the B12 daily at least on an empty stomach. If this is an optic neuritis, maybe even MORE per day. Were you taking the B12 when the test was done? It might skew the results if so.

I'd also ask the doctor if you had any events while under...like a cardiac arrest? I had a patient who had a bypass and she had an event during the restart of the blood supply after they were finished, and she lost the vision in one eye as a result.
(these are called scotomas).

I'll be back later...

Hi again.

I was just started on the prednisone about a month ago due to the MG weakness.

My scotoma is a white or very gray spot. I didn't have an angiogram on it - just the ophalmologist visits where he checked for signs of brain stroke, glaucoma, retina problems (all neg) and he did the vision field test which is what really threw him. Actually, I have had intermittent pain in my eyes for years that has increased in the last year or so. Mostly when looking at something close like when I'm lighting a smoke. So I really think this scotoma has its start prior to the coil and just got way bad after, like all my other symptoms.

I just saw something on the inet that oral B-12 won't help much with a certain condition - unfortunately I don't remember the exact info, but it came up while I was researching this platinum/demyeliniation/CIPD stuff.

I can't wait to get the results on the b-12 test. As I understand it though, if it shows I'm deficient, that's not necessarily gonna get me off the hook on this CIDP thing though, is it. It's a possible cause of PN, but with this long a run, I'm kinda in a bad place, right?

Again - Thanks so much for all your efforts on my behalf. And I LOVED the link to the quotes - see the one I've added to my signature!

That is a great quote. I like most of his in fact. They are true, some funny, and even if not funny, they still have a shred of hope attached to them.

Here is the list for Prednisone:

Calcium
Magnesium
Potassium
Selenium
Zinc
Folic acid
Vitamin D
Vitamin C

A month is long enough at this high dose, to deplete potassium.
When that happens, then you get WEAKNESS. Now this may be hard to separate out from your MG symptoms. So eating foods high in potassium is a must. Next blood draw ask for a test for levels to make sure.

Also the new information about Vitamin D is important. It might be affecting your disease states. You can be tested for this too.
And since Prednisone depletes it, you will get behind anyway.
We have a new thread on Vitamin forum with an interesting video from Australia that Lara put up:
http://neurotalk.psychcentral.com/thread81900.html
I think the dose for maintenance they state is deceptive, for most people. Esp those who don't get tested. Also there is alot of sun down there, and if you live in a Northern area 1000IU a day is not much. I take 4000IU in winter now, and none in summer.
That is working for me well. D3.

Mestinon is not studied enough/used enough to have a recommendation about nutrient depletions.

I would ask for a retinal angiogram, and get one unless you don't have insurance, or access for some reason. It is definitive for vascular vs neuro causes.

Metaprolol depletes CoQ-10 and melatonin. It may be masking some blood pressure increases from the pred, and may be masking glucose changes from it as well. It can hide diabetes effects.

B12 is involved in myelination, along with B6 and folate. Fish oil also helps. Fish oil has anti-inflammatory effects as well. So it might help your vascular worries. It strengthens blood vessels.

For now the potassium is the biggest worry. Vit D a concern and the other minerals you can get from a Centrum Senior.
As you continue, Magnesium also is important. Low levels cause vasoconstriction, and you can get this from food too, or
supplements. I have a thread on it:
http://neurotalk.psychcentral.com/showthread.php?t=1138

Make sure your doctors who are giving that aspirin + Plavix understand the increased dosing of Effexor. Some doctors don't know SSRIs increase bleeding!

Tomorrow I'll look around about the platinum.

I forgot the fish oil I'm taking on my list - silly me!

Interestingly, before I had the coil, hence started the prednisone, etc., my blood draw did show me a little low on D and potassium. I will definetly get those added to my regimen (I'm gonna have to buy a bigger pill box, I think ).

You are such a wealth of information and sound guidance and advice.

Bless you!

Becky,

I am sending you a PM with the links I found so far.

So look for that.